When good people struggle....

I would argue that it is easy to be intellectual, community focused and values driven when the people we support behave well. The real test of our work and OUR values come when people struggle, when they behave in ways that embarrass or frighten us...or those around them. During my tenure in this field I have spent most of my time with people who experience significant challenges generally labeled "behavioral". This past three years I have been able to work with folks who generally require little to no behavior management; no big interventions, no written plans to produce acceptable or safe living and with few exceptions are happy participants in almost all areas of daily life.

However recently a few folks have struggled mightily to find peace and happiness in their worlds. Medications have been adjusted, hospital stays have proven to be less than perfect, and daily life is filled with ups, downs, anger and fear. One woman has moved so far away from her stable and happy self that people are baffled as to how best to support her. Both women deserve better and have the capacity for better living. This is when our job becomes most important...how we reach out into their darkness and give support and encouragement will never matter more. Supporting success and peaceful living rather than fear and drama is critical and so very hard. These are the days that we prove our value in this business. I believe accepting and meeting both of these ladies where they are is step one...moving beside them to step two is the harder thing to do. I fully believe we can do this. We must.

Worry, worry...what will be next? Need community NOW!

I worry for the people we support. I look at how difficult the days ahead are and think to myself that now is the time..we need to be together, ALL of us. How can we help families of people with disabilities and how do we ensure that all those in need do not get left behind?

Not only do people with disabilities have to worry but other folks such as elderly are at serious risk. A case in point was today visiting with Seniors Plus and talking about the lack of care for elderly, particularly day supports. Many of these elderly are living with their children and during the day need assistance to be safe and to stay in their family home. There are no services and I wonder why? All of these folks worked hard their whole life, raised children and lived among us...but now they are looking at lives of loneliness and possible nursing home care simply b/c we cannot offer support to help them stay at home. Suddenly they are devalued. I wonder if there is a way to make a difference in their lives?

What will Families do? Dark Days Ahead.

I have wondered in the past months --what will families do? As the economy dives it is so hard to comprehend all the impact but families with a disabled member will most certainly feel this one. If there are no services available what will parents do when their child is out of high school. Most families do not fully appreciate that during the school years the state must provide services but after graduation it is optional.

Money is tight and options for families are getting less...waiting lists for services all over the country grow...so sad. Our folks are the one unique group who have absolutely no choice about their condition and it seems perhaps their future.

Laughter and Honesty

Good Heavens's my friend Greg made me laugh the other day. I was at his home, a group home, doing a quality review. He was in a great mood and did his usual banter and laughter.

He came over and told me that "this couch (he pointed to the living room couch) is not fit to sit on" and then he used some words that I will not repeat and reminded me that "you have all the money lady." Next we walked out into the laundry area where there are two floor to ceiling shelfing areas with curtains instead of doors...now I would venture a guess they are made of sheets. He said "Now this is GD stupid, what do we have these hanging here where there should be doors, this is just stupid and the look stupid". All of this is said with a heavy Maine accent and a bit of a smile...knowing he has my audience. But I knew that he was right...I would not want it in my house and it did look kind of weird.

Then Greg told me that his employer (a per Diem job he has had for years) might need him to work on a Monday...he currently does not attend TPC on Mondays (by his choice) and he said "Now I told them that I do not go to the Progress Center on Mondays BUT if THEY need me I will work". I said sure you dump us but are happy to go there on a Monday. He gave a big smile and said "you are rooting tooting right I will because it is fun there". We both laughed, I gave him a hard time for coming up with rooting tooting...but we both also knew he loves his "real job". While I got to laugh with him and we were able to joke about the silly stuff that happens in our world his honesty is rare and wonderful. Made me go home and think about how important it is to be REAL!